Posted by: Jeannie Day ®
12/30/2002, 23:46:34
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Mary, I asked my doctor, Dr. John Burns, that last year when I said I didn't think I was getting as good results with the Botox. He said I didn't need another limited myectomy. That doesn't really answer your question though. You're asking if it's possible to have another one.Jeannie from Ohio
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Posted by: Alan Phair ®
12/31/2002, 11:09:23
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Mary, I am no expert and I would ask one of the great doctors who deal with BEB daily but I think the answer depends upon the amount and type of scar tissue that you have left over from the previous Myectomy. I have had three so far. Two upper ones and one lower. I had the second upper done as the first one did nothing to relieve my spasms and in my mind was just a very limited one that dealt mostly with the cosmetic issues of baggy skin etc. The ones done by Dr. Anderson were much more extensive but in my case, even those are beginning to wear off. I am a very unusual case as the botox does little for my and my metabolism seems to restore things pretty quickly. My forhead which used to be all pins and needles and numb is almost back to a normal state where it feels normal. I am seriously thinking about calling Dr. Anderson about the feasability of doing it again. By the way, it usually lasts for most people for many many years so don't go by me....Alan
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Posted by: Patti Miller ®
12/31/2002, 11:57:16
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Mary, I had my first myectomy by my doctor locally 10 months after being diagnosed with BEB because I was a Botox failure (I was diagnosed in June 2001). About 8 weeks later, my doctor went back in to try to do a little more since he thought the stitches slipped. BOth of these failed to help and the Botox didn't work at all after these surgeries. My condition was compounded by Bells Palsy in one eye.I just returned from my third surgery, but with Dr. Anderson in UT. I was concerned about the scar tissue since it had been 8 months since the first surgery. Dr. ANderson said it wasn't too bad. One lady on the BB posted about having a second myectomy 15 months apart and the scar tissue was so bad she said she was worse off now than before. Like Alan said, all cases are different and you have to consult your doctor - but personally - I wouldn't have anyone else do a second myectomy on me except Dr. Anderson. The woman who was worse off than before her first didn't go to Dr. Anderson and regrets it. Alan, how long has it been since Dr. ANderson did your last myectomy? I was wondering if they wear off. Patti in SC
--modified by Patti Miller at Tue, Dec 31, 2002, 11:59:42
Modified by at Tue, Dec 31, 2002, 11:59:42
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Posted by: Ann Doyle ®
12/31/2002, 12:34:20
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I read recently on one bb and I can't remember which one, that what Dr. Anderson calls a limited myectomy, other Drs. might call a full myectomy. Over the years he is became aggressive and therefore they last longer.
I also heard one DR quoted that he expected his(not DR Anerson) would last between 3-5 years.
It soounds like different Drs. cut different muscles and more of them
I know I want a myectomy and I want Dr. Anderson but my whole family is against it. We live in Ky. and it would be expensive. Just 2 years ago I had brain surgery by the Worlds best Neuology surgeon and had it done quite a distance away and it didn't work, his worst failur . My family was all for it before hand and was quite proud of me for finding out what was wrong and about the Dr. on the computer. Now they don't trust me or the computer. My husband thinks I am wasting money and we've lost quite a bit on the stock market the past 2 years because he was greedy and went for the big ones. Sorry. Had to get that off my chest. Can't tell my children I am mad at their dad and my best friend is my daughters mother in law so I can't talk to her either. I've been venting a lot on the board. But gee , it's my face and life . I want the best. Ann D
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Posted by: Patti Miller ®
12/31/2002, 21:51:00
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Hi Ann - I didn't know you were from my home state. I was born in Pikeville. About the myectomies - my doctor did my first limited myectomy on my upper eyelids. He wasn't aggressive at all. He didn't call it a full myectomy. As I understood from my conversation with Dr. Anderson, he doesn't do the full myectomies anymore. He found them not to be any more effective than the upper and PART of the outside lower eyelids. His technique if very aggressive compared to my first one.Ann, you can vent and we'll listen anytime. We all go through things and need a shoulder to cry on - I have a big one right now for you. I am so sorry that your family is not in agreement with you right now, but let's keep praying that they'll change their mind for what is best for you. This is a hard disease to understand and to live with, and others don't understand all the time. That's why this BB is so important to me and to others. Hang in there Hon, we're all going to make it. Love ya - Patti in SC
--modified by Patti Miller at Tue, Dec 31, 2002, 21:52:29
Modified by at Tue, Dec 31, 2002, 21:52:30
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Posted by: Ann Doyle ®
01/01/2003, 16:32:06
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Thanks Patti, that helps a lot. Just knowing someone really understands and cares.
I just looked at my last post and all the mistakes. It was before my Botox took effect.
Speaking of Botox, it keeps working differently . This time, I feel very good for an hour or so and then half way bad--I can keep mye eyes open by force but it's a strain and my whole face hurts. Does anyone else have it work like that? Ann Doyle
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